The MacNeil/Lehrer Report; 7057; Fetal Surgery on Birth Defects

ROBERT MacNEIL: Good evening. Every year, roughly a quarter of a million children are born with mental or physical handicaps. That`s approximately one birth in 12. For some time, doctors have been able to diagnose many of those problems before birth, but have not been able to correct them. This summer a group of doctors in California announced a breakthrough -- surgery on an unborn fetus to treat a defect before birth. The development immediately raised hopes that many birth defects could be corrected before babies are born. But it has also raised new ethical questions, and at the same time, it strengthened the arguments of abortion opponents, who claim that an unborn fetus is a human being. Tonight, how far can fetal surgery go in preventing birth defects, and how will it change our thinking about the unborn fetus? We begin with the first successful case of fetal surgery, the Skinner case in California. Jim?

JIM LEHRER: Robin, last fall, Mrs. Rosa Skinner of San Mateo, California, became pregnant. Doctors using a diagnostic instrument known as the sonogram determined that she was carrying twins, a male and a female. The sonogram showed that the female fetus was progressing normally, but the male was not. Further tests were ordered. They showed that the male`s problem was an obstruction in the urinary tract. If not corrected, irreparable harm would be done to the kidneys and lungs. They would never develop normally. Doctors suggested operating on the fetus. But there were dangers to the mother and to the normal female twin. After much consultation, Mrs. Skinner and her husband said, "Do the operation." And on April 26th at the University of California`s Moffitt Hospital in San Francisco, doctors placed a catheter tube into the male fetus`s bladder. A build-up of fluid that was caused by the obstruction was drained out and the problem was alleviated. Two weeks later Mrs. Skinner gasve birth to her twins, a girl, Mary, and a boy named Michael. One of the surgeons who performed that operation was Dr. Michael Harrison, co-director of the fetal care program at the University. He`s with us tonight from the studios of public station KQED, San Francisco. Dr. Harrison, how is Michael Skinner now, nearly four months later?

Dr. MICHAEL HARRISON: Well. Michael is getting along just fine. I saw him in the office last week and he`s growing and developing normally.

LEHRER: He is at home, then? He`s not still in the hospital?

Dr. HARRISON: Oh, no. He has been home for a month. And the important issue for Michael was how well his kidneys would continue to function, and fortunately they have been just right. He has normal kidney function.

LEHRER: Do you foresee any need for any further surgery or anything like that, or is he perfectly normal?

Dr. HARRISON: Oh, no. He still has his anatomic obstruction, which in fact we just relieved a couple weeks ago. But, he also --

LEHRER: What do you mean by an "anatomic obstruction?" What do you mean?

Dr. HARRISON: Remember, his original problem in utero was a very simple obstruction in the urethra, the penis, so the urine couldn`t get out. And so we bypassed that in utero simply by placing a tube into his bladder. Now, after birth, we have to deal with all the consequences of that obstruction, and so when he was born we brought his urine out in a different area. But all that is pure mechanics. It will eventually be completely reconstructed, and he`ll be normal. All that is done so that his kidneys can function normally, and thank goodness they`re doing just that.

LEHRER: I see. But eventually he will be -- you`ll be able to remove that obstruction, and he will be able to function normally, is that right?

Dr. HARRISON: Exactly.

LEHRER: I see. Now, what about his sister, Mary?

Dr. HARRISON: Oh, she`s fine. And she never had any trouble.

LEHRER: She never had any trouble. So nothing has developed since. How about Mrs. Skinner? She`s okay, too?

Dr. HARRISON: She`s doing very well. They`re delightful people.

LEHRER: I see. Well, look. Doctor, from your perspective, why was what you did in April to the male fetus, Michael Skinner, why was it so significant in your eyes?

Dr. HARRISON: Well, I`m not -- I`m not so sure it was all that significant. Certainly, technically -- as a technical maneuver it wasn`t terribly significant, and to be honest with you, it wasn`t terribly difficult. It was a perfectly obvious thing to do. Perhaps as a philosophical maneuver it`s a little more novel. I think it`s -- in my mind the issue is that the fetus has for so long been a mysterious little devil hidden away in the womb, and it`s only very recently we`ve gotten any handle on him through fetoscopy, where we look at him with a telescope, and through amniocentesis, where we draw some fluid out around him and analyze it, and best of all with the sonogram, where we actually see him real-time and can watch him breathing and eating and doing all that stuff. And so, it`s only very recently that we realize that here was an individual who had problems, and whose problems were a perfectly appropriate subject for scientific observation and, in some rare instances, for medical treatment.

LEHRER: You say "rare instances." In other words, you don`t believe that what you did -- which is operating on a fetus -- is going to become a very commonplace thing as a result of your having done it and done it successfully?

Dr. HARRISON: No, I don`t. And the reason is that there just aren`t that many lesions which make sense to go after in utero. There are lots of them that we can diagnose, but most of them are much better treated after the baby is born. Or some other maneuver. So there are only a very few lesions that, need to be dealt with in utero, and frankly, I think the significance of Michael is in pointing that out. He was really the culmination of a great deal of study in experimental animals demonstrating that this particular lesion -- this simple obstruction to the flow of urine -- should be relieved, that is, you`ve got the desired result, and could technically be relieved.

LEHRER: When you sat down with the Skinners, you and the rest of the members of the medical team to lay out their options, what did you tell them to consider? What were their options?

Dr. HARRISON: The options are always, first and foremost, the oldest option of all -- to do absolutely nothing, and that`s a very acceptable option in almost all cases.

LEHRER: What would have been the consequences of doing nothing?

Dr. HARRISON: Well, from looking over a good number of fetuses, almost 20 now, who have urinary tract problems diagnosed in utero. we can -- we`re getting more and more confident about predicting the outcome if we don`t do anything. And we know in the fetuses who have severe obstructions, and begin to lose the amniotic fluid around them, that that`s a sign that their kidney function is being compromised, and most of those babies -- all the ones we`ve seen, in fact, with severe early obstructions -- have died at birth because the lungs and the kidneys simply are not developed enough.

LEHRER: Well, so quickly, that was an option, then, and you posed to the Skinners the danger. Was there a potential danger as you saw it to the normal twin, and also to Mrs. Skinner, the mother?

Dr. HARRISON: Right. One option was to do nothing; another option was to. in this case, there was no option for terminating the pregnancy. Certainly we were too far along, and that wasn`t an issue. The option was to attempt to treat it, and they wrestled with this problem along with us and other people on our staff for several weeks before they asked us to go ahead with this. And there certainly is -- there`s a risk in every dam thing we do. And there was a risk that we would incite pre-term labor and pre-term delivery, which would jeopardize the perfectly normal girl.

LEHRER: I see. All right, thank you. Robin?

MacNEIL: The Skinner case quickly gave rise to a number of new questions for doctors. One doctor who is uneasy about the new procedure, and raising these questions, is Allan Bruckheim. associate professor of family medicine at the State University of New York at Stonybrook, and director of family practice at the South Nassau Community Hospital on Long Island, New York. Dr. Bruckheim. briefly, why are you uneasy?

Dr. ALLAN BRUCKHEIM: Well, it`s always hard to put a handle on a feeling of uneasiness or anxiety. I guess one has to look at one`s own orientation. I`m a family physician, and I deal not only with just diseases or individuals, but with groups of individuals -- parents, children, and grandparents and the like. And that gives you a sense of responsibility that goes beyond a single individual or a single medical entity. And I guess when you go out onto new waters without charts, and to uncharted depths, you`re also going to have a feeling of anxiety. This leads one to think a lot, and in thinking about it, questions do arise. And pretty soon you begin to have real reasons for being anxious, rather than just an unfelt anxiety.

MacNEIL: Well, what are your questions and your real reasons?

Dr. BRUCKHEIM: Well, we`ve heard that there are ways of diagnosing prenatal or anti-natal I sic} conditions through use of a lot of modalities. One is sonography. Thank god sonography is what we call noninvasive; it doesn`t go into the body, and we know of no contraindications to it. But my feeling is, are we going to be asked by every pregnant woman to start to do this kind of research on the fetus? Is it going to be necessary?

MacNEIL: What would be wrong with that?

Dr. BRUCKHEIM: There wouldn`t be anything, but there would be a tremendous cost factor. In fact, there are some countries where sonography is applied once or twice in every pregnancy. It`s not common in the United States. It`s a new question. It`s a new question whether we can, or whether we should, do this thing. What will be the productivity of it? One case in 5,000? Two cases in 5,000? Is it something we`re going to have to look at? And that`s a question without an answer. I don`t intend to give the answer as much to the question that disturbs me. If we do find something wrong, if there is a correctable defect, are we obliged to do it? Do we have to have the operation? Well, if you look at appendix -- the appendix, the acute infection of appendicitis, there`s no longer any question that when we discover it, we must operate. And it`s historical fact that things that are something that you can do, that you have a choice, rapidly become things that you must do.

MacNEIL: Well, if you can in a case like this save the life of a child -- are pretty sure you can save the life of a child -- isn`t that reason enough for doing it?

Dr. BRUCKHEIM: Yes, that`s reason enough. You`re not going to get a doctor who is u family physician to say that when you save a life, that`s a bad thing. And we`re not talking anecdotally of a single case. I don`t mean to do that. I think that would be irreverent, and it would not be worthy of my profession. We`re trying to talk of the larger philosophical situations which will come up. and which can. in the long run. create questions of ethics to the physician who must help in making the decision when dealing with parents and dealing with families.

MacNEIL: We`ll come to some of those considerations in a moment. I want to ask you a more practical case. As a doctor faced with the decision to intervene or not to intervene, are you saying that nature has its own way of taking care of some of these things, and should be left that way ?

Dr. BRUCKHEIM: Yes. nature does have; we call them "lethal genes." There are some conceptions which just do not survive because the genetic makeup of that individual is not sufficient to warrant life. And I think we had that for a long time before we knew what was going on in utero. This would have been considered to be a lethal situation, and therefore not viable upon birth. And it was an easy way out. I don`t think that easy way out is available to us any longer, and I`m uncomfortable because of that. Thai was nature`s way. if you will, or if you took it in a religious sense -- and I`m sure we`ll hear about that -- that was another way out. But physicians must accept this responsibility, now. and we have no guidelines.

MacNEIL: Dr. Harrison, do any of these grounds of uneasiness give you -- raise questions for you?

Dr. HARRISON: Well. I think so. I share Dr. Bruckheim`s anxiety. And if he thinks he`s anxious thinking about it from a distance, it`s considerably more anxiety-provoking to actually deal with these problems when you`re talking to the mom and the dad and the family about the options for a fetus. And I think we need to think through them very carefully, and I think we all need to be just very skeptical that we -- about what we`re doing, that we don`t do too much, that we don`t do something to the wrong fetus, and as he points out, that we don`t somehow let our technology lead us to do things that -- that aren`t necessary.

MacNEIL: Did I -- excuse -- go ahead, Dr. Harrison.

Dr. HARRISON: No, I just -- I was going to point out to Dr. Bruckheim that my dad was a general practitioner in Vancouver, Washington, and when I told him we were thinking about doing this thing, he said. "Next thing you know, you`ll be doing circumcisions in utero."

Dr. BRUCKHEIM: Well. I knew there was something good about you. Dr. Harrison, and now we find it`s your family tree.

MacNEIL: But, did I understand you to say a moment ago that you thought that now -- you were saying, in effect, because it can be done, it will be done?

Dr. BRUCKHEIM: Yes, I`m saying that that`s the history of medicine. And I hear Dr. Harrison loud and clear when he says. "Don`t take this first step," as meaning that we`re going to have to do it all the time, or that everything like it should be done, because I think he`s aware, as I am, that the promise of the almost impossible readily becomes the mandate upon the medical profession to perform that impossibility.

MacNEIL: Are you getting that already. Dr. Harrison, from other parents?

Dr. HARRISON: Not so much from parents, but I think it`s a very real issue that Dr. Bruckheim raises, and I think one of our important jobs here is to -- is to put this thing in perspective, and to just say flat out this is not a -- let me tell you that fetal diseases amenable to correction are rare. It is not a public health problem. They need to be pursued extremely cautiously and carefully, and it`s just not a panacea, and we`re not that good at it.

MacNEIL: Well, thank you. Jim?

LEHRER: Pre-birth surgery involves not only medical questions, of course. There are also ethical and society issues as well. John C. Fletcher has studied those. He`s a Ph.D. in ethics who is the assistant for bioethics at the clinical center of the National Institutes of Health here in Washington. He`s also an Episcopal minister. The ethical questions are what, Doctor?

Dr. JOHN FLETCHER: I appreciate the chance to be here. Let me say that I`m here presenting my own views, and not the views of my department.

LEHRER: All right.

Dr. FLETCHER: There are several clusters of ethical issues around the general question about the moral status of the fetus. For example, if physicians like Dr. Harrison really got good at this, and could know that they could do a great deal of good every time they did the procedure, and could tell the parents that the likelihood was that they were going to do good, it could happen in the future that parents would disagree and not want the surgery. Particularly the mother might disagree. So the first kind of conflict that conies to mind is. what do you do when you have a conflict between a physician who can do some good, and a parent who. for whatever reason, disagrees?

LEHRER: What do you do?

Dr. FLETCHER: Well, in my view, you resolve it -- depending on the circumstances, you resolve it in the interest of the mother. That is, the rules that we now have that govern our considerations when there are conflicts of this kind is that the mother`s interest can override the interest of the fetus, given that you`re at the right time, that is, it`s not too late in pregnancy.

LEHRER: Go ahead. The other question.

Dr. FLETCHER: A second one related to the moral status of the fetus is. how much does the "wantedness" of the fetus count in these things -- the fact that it`s a wanted baby? And ought wantedness to be a big thing in the whole calculus of decision-making?

LEHRER: Give me an example of what you mean there.

Dr. FLETCHER: Well, Mrs. Skinner really wanted this baby, all right? Suppose she had been equivocal. If she was -- most women this late in pregnancy really want to have a baby. But the more cases you have, you`re going to bump into a woman who really doesn`t want the baby. Does that make a lot of difference? Another issue related to the fetus is. you have to learn how to do this, so the fetus at some point has to be a research subject. In other words, Dr. Harrison and others have got to learn what the normal fetus is like in order to try to cure the fetus that`s sick. In the cases that they can address. And so there are a lot of sticky issues about studying the fetus as a research subject. And there`s the question of how much of a priority should our society put on this kind of thing. That is, how much money should we spend on it? What kind of social priority should we give to it? And that of course is related to the long-distance question, where is this taking us? That is, if we let our minds go free and imagine what fetal therapy might be like 10 years. 20 years from now -- which I think we should, let our ethical imagination work -- where might we be going`.` For example, I`ve often thought of the possibility of doing embryo therapy: that is. trying to cure. say. with a recombinant DNA technique, a genetic disease in the first few hours, the first few days in which the fetus is conceived outside the mother, so you wouldn`t hurt her or harm her. And that`s one scenario where this might be going,

LEHRER: Is this a case, from your perspective, where the technology that was available to Dr. Harrison was way ahead of the discussion of these ethical questions that you have raised?

Dr. FLETCHER: Well, in my opinion, no. I think that physicians and commissions on which physicians have sat the last few years have been doing a pretty good job at keeping up the discussion. That is, those who have known a lot about prenatal diagnosis have wanted to have a means to treat the fetus. Many physicians and philosophers have said that the true purpose of prenatal diagnosis - -- ? when you can diagnose the disease -- is treat- ment, rather than abortion. And I`ve written a great deal about that ideal, that hope. But many of us didn`t know it was going to come this quickly.

LEHRER: I see. Thank you. Robin?

MacNEIL: The news that doctors may be looking at the fetus as a patient has been welcomed by many opponents of abortion. One who shares that view is Father Richard McCormick, professor of Christian ethics at Georgetown University`s Kennedy Institute of Ethics. Father McCormick, in your view, if the fetus is now a patient, does that make the fetus a person?

Father RICHARD McCORMICK: I don`t think it makes the fetus a person. Either the fetus is a person or it is not regardless of its availability to our surgical interventions. What I think is interesting here, though, is to go back to the phrase that Dr. Harrison used, we now can get a handle on the fetus, so to speak. And it`s been my conviction for a long time that the very limited relationships that we have to a fetus in utero is a strong contributing factor to the -- to the phenomenon of the acceptability of abortion in this country on such a broad scale.

MacNEIL: So what will this new development do to the debate on abortion?

Father McCORMICK: Well, I hope -- whether this will come true or not, I`m a terrible prophet -- but I hope it will change the perspectives of people on the type of life they`re dealing with in utero.

MacNEIL: Why would it do that?

Father McCORMICK: It would do that because, for one thing, our language will change. I`ve been dealing with some doctors at NJH on these problems, and they constantly refer to their "little patients" that they`re showing through sonography and so forth. And that very language indicates a type of uniqueness that is there, an individuality which can affect our whole evaluative judgments here.

MacNEIL: Up `til now, opponents of abortion have, by and large, also been opponents of some of the diagnostic techniques -- prenatal diagnostic techniques -- like amniocentesis, on the grounds that they often led to abortion or were a prelude to abortion. Is that attitude going to change now, do you think?

Father McCORMICK: Well, I think it should, with a good deal of caution, yes. Because obviously these prenatal diagnostic techniques, while up to now associated fairly uniquely with the possibility of abortion, not absolutely, though, will now expand, and can be used for quite a different thing -- fetal therapy -- and that we should be very cautious, therefore, in these blanket condemnations of those techniques.

MacNEIL: What about the question that we just heard discussed? When there is a conflict between a treatable fetus and the wishes or the health of the mother?

Father McCORMICK: Well, I suppose -- I`d be very close to John on that. It seems to me it`s a matter of degree: what kind of danger are we speaking about? A danger to a mother could be quite minimal, and I would hope that those minimal risks that in cases like that, mothers would be quite willing to undertake them and to bring help to the child in utero. But it`s a question of just how great it is. And I don`t think any rule that we can devise -- as people in ethics and moral theology -- is going to give too great a clarity on that point. I think all we can do is give general guidelines, and then leave it up to the clinicians to discover whether or not in the individual case this particular course or that particular course is the way to go.

MacNEIL: Well, thank you. Jim?

LEHRER: Do you agree. Dr. Fletcher, that a rule for this isn`t going to work?

Dr. FLETCHER: Not a blanket rule. There has to be a range of possibilities and a flexibility towards decision making in this situation, rather than -- rather than hard legal approaches to this problem.

LEHRER: In other words, it should be left, then, to the physician to make the decision?

Dr. FLETCHER: I think the best structure within which to make the decision is the physician-family relationship. Not just the physician-patient, or mother-fetal relationship, but, as Dr. Bruckheim pointed out, you`re dealing with a whole family here, and although in the crunch the mother`s needs come first to my way of thinking. And I think that is our practice at present. I would advise all physicians to be in touch with all members of the family about this, to let them know what`s going on.

LEHRER: And Dr. Harrison, that`s of course what you did in the Skinner case, right?

Dr. HARRISON: Right. And I would only add to that that when you`re actually there offering treatment to a fetus that may endanger in some way the mother, you`ve got to have absolutely straightforward communication and complete cooperation. And I think anybody who would undertake an innovative maneuver without 100 percent enthusiastic support of everybody in that family, that would not be right. And I don`t think you could do that in conscience.

LEHRER: Dr. Harrison, there`s a question I must ask you based on the discussion that has come up since you spoke a moment ago. Did you view the male fetus, Michael Skinner, as a patient?

Dr. HARRISON: Yes. And I think Father McCormick`s point is a good one. You know, when you actually are watching these little characters under real- time sonography, and trying to sort out what you should do, or if you should do anything, or what the options are, they`re very much a patient. But of course, we`re dealing with fetuses relatively late in pregnancy, and they really are -- they`re individuals.

LEHRER: Dr. Bruckheim, what`s your view on that -- on the fetus as a patient?

Dr. BRUCKHEIM: Well, the fetus is part of the patient, in my view. All the interactions that go on between physicians and patients really take four things into consideration. I think the first thing they take into consideration is the law of the land. And doctors tend to be law-abiding. I think it takes into consideration the medical ethics, and that`s what we`re looking at tonight -- the ethics and the guidelines that one can have in practicing medicine. I think we now have to look at patients` rights, and that`s a plural word in this particular circumstance: the right of the fetus, the right of the family. And the right of the whole entourage around that family, and last, but certainly not least, it`s the doctor`s own professional and moral attitudes that have to play a part in this. And so each interaction becomes a unique interaction, and must follow or fall within those four guidelines.

LEHRER: Dr. Fletcher, are you concerned that -- both Dr. Bruckheim and Dr. Harrison have stressed that this was not the kind of thing that should be used indiscriminately, and Dr. Harrison said be careful; it`s a rare situation when it should be used. Looking at the situation do you think that is going to, in fact, happen? Do you think that it is going to take off and a lot of people are going to demand this kind of thing?

Dr. FLETCHER: They may want it, but I don`t believe it will take off because the expertise to do the kind of thing that Dr. Harrison has done is very rare. I mean, there are very few fetal surgeons. You can check that out with him, but I think seven or eight years, given a lot of success in fetal surgery and fetal therapy in the conditions that they can treat -- once that floor is there, you`re going to see a lot of additional interest in treating the fetus much earlier.

LEHRER: Thank you. Robin?

MacNEIL: Yes, that`s our time for tonight. Dr. Harrison, thank you for joining us from San Francisco. Father McCormick, Dr. Fletcher in Washington, Dr. Bruckheim in New York. Good night, Jim.

LEHRER: Good night, Robin.

MacNEIL: That`s all for tonight. We will be back tomorrow night. I`m Robert MacNeil. Good night.